1 00:00:09,39 --> 00:00:15,04 Hi welcome to reaching out I'm your host Cam Kerry and today we have Sharon Waldrop 2 00:00:15,19 --> 00:00:20,87 who is the director and founder of the fibromyalgia Association of Michigan welcome 3 00:00:21,02 --> 00:00:25,58 to thank you know families here and so happy to be here thanks so happy to have you 4 00:00:25,68 --> 00:00:32,68 OK Very good so why don't we start by telling us what fibro my algea five 5 00:00:32,69 --> 00:00:33,40 are my all just 6 00:00:33,41 --> 00:00:38,23 a complex kind of pain illness that affects about ten million Americans which is 7 00:00:38,24 --> 00:00:43,27 about five percent of the people in our country and it affects women men and 8 00:00:43,28 --> 00:00:49,72 children of all races and again all ages it does seem to affect more women than men 9 00:00:49,73 --> 00:00:54,54 right now however why is that. A lot of research is going into that now to 10 00:00:54,55 --> 00:00:56,78 understand why there's such 11 00:00:56,79 --> 00:01:01,59 a disparity in the numbers between women and men having the condition but I do 12 00:01:01,60 --> 00:01:05,43 think that possibly with the research that's being done we may find that there's 13 00:01:05,44 --> 00:01:10,46 actually more men out there with the condition than than who are just they don't 14 00:01:10,47 --> 00:01:15,34 know they haven't gotten a diagnosis of fibromyalgia yet OK We were speaking 15 00:01:15,35 --> 00:01:21,74 a little bit earlier and you said that it could be hormonal as to why women have 16 00:01:21,75 --> 00:01:28,28 this illness. I think that there could be some truth to that and I know that people 17 00:01:28,29 --> 00:01:32,92 have requested more studies on the hormonal link because obviously that is one 18 00:01:33,05 --> 00:01:37,47 major difference between men and women's bodies so you know possibly there's 19 00:01:37,48 --> 00:01:42,84 something there that needs more investigation and I know personally for me and also 20 00:01:42,85 --> 00:01:48,68 other women who've had children while they've had fibromyalgia. There's there's 21 00:01:48,69 --> 00:01:53,25 changes that go on with the body some people actually improve their symptoms get 22 00:01:53,26 --> 00:01:58,18 better when they're pregnant so that's one theory why I think there could be 23 00:01:58,19 --> 00:02:03,48 something to that too with my personal story that I'll share with you on the show 24 00:02:04,46 --> 00:02:09,11 after my children were born I before they were born after I was diagnosed with 25 00:02:09,12 --> 00:02:10,55 fibromyalgia I had 26 00:02:10,56 --> 00:02:16,30 a very difficult time walking and stairs were just next to impossible for me and 27 00:02:16,31 --> 00:02:21,03 after the birth of my children I'm able to do stairs again so wow so that America 28 00:02:21,13 --> 00:02:27,86 Yes that's awesome OK But before we get into your story. Tell us why you 29 00:02:27,87 --> 00:02:34,19 form the association and how it came to be sixteen years ago when I was twenty four 30 00:02:34,20 --> 00:02:41,13 I was diagnosed with Fibromyalgia and I was twenty four and working 31 00:02:41,14 --> 00:02:44,34 in my first job out of college and just you know having 32 00:02:44,35 --> 00:02:50,72 a great time I was very active I love to exercise I would ride my bike ten miles 33 00:02:50,73 --> 00:02:55,38 a day I'd love going down to Metro beach and I would you know go along the parkway 34 00:02:55,39 --> 00:03:00,52 there riding my bike or roller blading might also three days 35 00:03:00,53 --> 00:03:05,14 a week go to the gym and work out with weights and fiber my old to hit and when 36 00:03:05,15 --> 00:03:09,54 that happened to me walking from my bedroom to the kitchen which in 37 00:03:09,55 --> 00:03:14,13 a twelve hundred square foot house I would literally lay down and need to take 38 00:03:14,14 --> 00:03:19,52 a nap on the floor because I was so fatigued from that walk in and so much pain 39 00:03:19,56 --> 00:03:23,26 that I would have to rust and you were young you were twenty four. I was twenty 40 00:03:23,27 --> 00:03:26,73 four so what was going through your mind when this happened did it happen suddenly 41 00:03:26,74 --> 00:03:28,67 one day or it was 42 00:03:28,68 --> 00:03:34,22 a progression over about. Oh about four to five months and. 43 00:03:35,44 --> 00:03:39,34 I have other conditions one of which being T.M.J. 44 00:03:39,68 --> 00:03:40,27 Which is 45 00:03:40,31 --> 00:03:45,71 a job disorder and I was diagnosed with that at the age of eighteen and it turns 46 00:03:45,72 --> 00:03:50,64 out that I have no job joint left and the doctors are trying to figure out why at 47 00:03:50,65 --> 00:03:51,52 eighteen I don't have 48 00:03:51,53 --> 00:03:56,80 a job going so on that journey to discover what was wrong with the jaw I was 49 00:03:57,10 --> 00:04:01,96 diagnosed with fibromyalgia which I'm one of the lucky few because on average it 50 00:04:01,97 --> 00:04:04,39 takes about five years for people to still get 51 00:04:04,40 --> 00:04:08,67 a diagnosis with fibro my allergies and why is that share it's difficult to 52 00:04:08,68 --> 00:04:14,96 diagnose there's a lot of symptoms that mimic other diseases there's 53 00:04:14,97 --> 00:04:21,04 a lot of overlap between even other conditions often people with fibromyalgia have 54 00:04:21,05 --> 00:04:28,04 other conditions as well perhaps all. In Are social cystitis full of 55 00:04:28,05 --> 00:04:34,75 Adin. Chronic fatigue syndrome so there's Of lot of other things. They 56 00:04:34,76 --> 00:04:41,61 could be different for example or say rightists are very similar so. The fiber 57 00:04:41,62 --> 00:04:47,44 my all just symptoms also mimic amassed LUPUS so at the beginning when you're 58 00:04:47,45 --> 00:04:51,02 trying to figure out what's going on when you have these symptoms 59 00:04:51,06 --> 00:04:55,24 a doctor will rule out and masts and lupus and some of these other diseases that 60 00:04:55,25 --> 00:05:00,23 are very similar and they do that because it's important to discover if you have 61 00:05:00,24 --> 00:05:05,26 one of those and start treating those and if you don't. You know then they know 62 00:05:05,27 --> 00:05:09,55 that they can move on to some other diagnosis like fibromyalgia Well how did the 63 00:05:09,56 --> 00:05:16,50 doctors go about narrowing it down to this is what it could be what are the 64 00:05:16,51 --> 00:05:21,36 tests what are what did they do well first it's important that they do rule out the 65 00:05:21,37 --> 00:05:24,31 other condition so then. Second they take a wide the take 66 00:05:24,32 --> 00:05:29,40 a history. And that's just you know use to time with your doctor face to face and 67 00:05:29,41 --> 00:05:34,90 talk about what your symptoms have been sent six started to occur and you know made 68 00:05:34,91 --> 00:05:39,73 me even explore beyond that and see if you've had chronic widespread pain for 69 00:05:39,74 --> 00:05:40,39 longer than 70 00:05:40,40 --> 00:05:46,67 a couple of months see if it's happening in all parts of your body they also still 71 00:05:46,68 --> 00:05:50,68 look at things called Tender Points which the American College of Matal and you 72 00:05:50,69 --> 00:05:55,40 came up with the tender points in one nine hundred ninety that helped physicians 73 00:05:55,74 --> 00:06:00,31 was one of the first test to really guide physicians and this is how you can more 74 00:06:00,32 --> 00:06:05,91 easily diagnose fibro my own show and so they can look at these tender points in 75 00:06:05,92 --> 00:06:10,63 your body and there's eighteen and previously they thought if you have eleven of 76 00:06:10,67 --> 00:06:14,81 eighteen of these sign you have fibromyalgia but we now know that the tender points 77 00:06:15,65 --> 00:06:16,11 are really 78 00:06:16,12 --> 00:06:20,66 a way for for scientists to research fibromyalgia so looking at the tender points 79 00:06:20,67 --> 00:06:25,18 is important but you could have less than eleven and still have fibromyalgia you 80 00:06:25,19 --> 00:06:28,62 could have more and you certainly do have fibromyalgia so it's 81 00:06:28,63 --> 00:06:34,66 a helpful tool in helping the physicians you know diagnose five from my own so many 82 00:06:34,67 --> 00:06:38,86 physicians are able to make that diagnosis by ruling out the other conditions and 83 00:06:38,87 --> 00:06:43,35 also by taking that history and discovering together what your symptoms have been 84 00:06:43,36 --> 00:06:47,61 and in the pain that you're in and how long that's been lasting So is it in the 85 00:06:47,62 --> 00:06:53,65 muscles and the joints or one of the other the penis felt throughout the entire 86 00:06:53,66 --> 00:06:59,30 body so it's usually felt more like in the soft tissue areas of the bodies but 87 00:06:59,31 --> 00:07:04,75 certainly the pain can be felt in the joints. Muscle tissue. 88 00:07:05,98 --> 00:07:12,65 Everywhere. You may if you're watching this show any of see Eve seen the tender 89 00:07:12,66 --> 00:07:16,100 points for fibromyalgia that doesn't mean that those are the only areas in your 90 00:07:17,01 --> 00:07:20,88 body you'll have pain it could be anywhere it doesn't just have to be at those at 91 00:07:20,89 --> 00:07:25,01 those points and to. Somebody with fibromyalgia when I go and I was just at the 92 00:07:25,02 --> 00:07:28,72 rheumatologist and you know anytime they touch it's like yes that hurts that hurts 93 00:07:28,73 --> 00:07:35,17 that I heard it's my body ascender everywhere case so as if you were to touch me it 94 00:07:35,18 --> 00:07:42,16 wouldn't I would not be tender right so that's. A signifier Yes that could be five 95 00:07:43,00 --> 00:07:49,93 that's right OK OK so it takes you said up to five years for diagnosis and you 96 00:07:49,94 --> 00:07:54,66 form the association to bring more awareness tell us more about that yes well 97 00:07:55,26 --> 00:08:00,29 that's I was starting to say when I was diagnosed sixteen years ago I really 98 00:08:00,30 --> 00:08:04,43 started to learn more about fiber in my Also I had never heard of it I couldn't 99 00:08:04,44 --> 00:08:09,85 pronounce it right when I was diagnosed with it so you know any information I could 100 00:08:09,100 --> 00:08:12,82 gather I wanted to you know read it and go to 101 00:08:12,83 --> 00:08:15,11 a conference which sixteen years ago there weren't 102 00:08:15,12 --> 00:08:16,69 a lot but I was fortunate to go to 103 00:08:16,70 --> 00:08:23,30 a few and. At that time the Arthritis Foundation was doing training for 104 00:08:23,31 --> 00:08:26,22 fibromyalgia support group leaders and I thought wow that's 105 00:08:26,23 --> 00:08:28,50 a great idea I had attended 106 00:08:28,51 --> 00:08:33,65 a support group but I cried all the way home because when I got there I was by far 107 00:08:33,66 --> 00:08:37,98 the youngest person in the room and then half of the people there were in 108 00:08:37,99 --> 00:08:41,51 wheelchairs and walkers and it was it was really kind of 109 00:08:41,52 --> 00:08:45,79 a pity party where we were sitting around talking about how bad life is that must 110 00:08:45,80 --> 00:08:49,88 have been discouraging to walk into a room like that it was I cried I mean it's 111 00:08:49,89 --> 00:08:53,22 a thirty minute drive and I cried all the way home and you know I was really 112 00:08:53,36 --> 00:08:58,49 depressed for days after that thinking OK I'm twenty four I'm not married you know 113 00:08:58,50 --> 00:09:02,19 I'm just beginning my career now my career is over how am I ever going to you know 114 00:09:02,20 --> 00:09:02,46 find 115 00:09:02,47 --> 00:09:07,73 a partner who would want to live with somebody with this kind of condition so it 116 00:09:07,74 --> 00:09:13,04 was devastating and when the. Foundation said they were doing 117 00:09:13,05 --> 00:09:16,36 a support group leader training I thought you know I would love to start 118 00:09:16,37 --> 00:09:19,28 a support group that brought people information but in 119 00:09:19,29 --> 00:09:24,52 a very positive way to empower people to take. Troll of their health so I started 120 00:09:24,53 --> 00:09:29,02 the support group in one thousand nine hundred seven and over the years with the 121 00:09:29,03 --> 00:09:32,63 help of some really great volunteers with the support group we did you know we kept 122 00:09:32,64 --> 00:09:35,71 growing our vision for what this group could be and what we could do in the 123 00:09:35,72 --> 00:09:40,81 community and we started doing community events and in two thousand and one we 124 00:09:40,82 --> 00:09:45,97 hosted our first Michigan fibromyalgia Awareness Day And so with all of these baby 125 00:09:45,98 --> 00:09:47,34 steps we were taking in to 126 00:09:47,35 --> 00:09:52,48 a large organization finally in two thousand and three we incorporated into 127 00:09:52,49 --> 00:09:57,09 a five zero one c three nonprofit called the fibro my allergist so see the Michigan 128 00:09:57,27 --> 00:10:03,13 excellent excellent So aside from the support groups did you seek any type of 129 00:10:03,83 --> 00:10:10,59 outside there to help you cope with the illness. Yeah there's 130 00:10:10,63 --> 00:10:16,74 there's so many things that people can do with fibromyalgia and myself included too 131 00:10:17,19 --> 00:10:21,73 the first step I think really is education and learning more about the illness and 132 00:10:21,74 --> 00:10:25,41 how it's affecting you so I finally found 133 00:10:25,42 --> 00:10:29,95 a physician that I was comfortable working with I think that that doctor patient 134 00:10:29,96 --> 00:10:34,61 relationship is so important and you want to find somebody who you know understands 135 00:10:34,62 --> 00:10:41,23 your condition understands you and together you can work together I really feel 136 00:10:41,24 --> 00:10:45,10 that the patient is the captain of their health care team and so you need to hire 137 00:10:45,11 --> 00:10:49,46 people to help you be on your team and help you manage your health because 138 00:10:49,47 --> 00:10:54,16 ultimately at the end of the day you have to be the one in charge when I know when 139 00:10:54,17 --> 00:10:59,20 you're sick the last thing you want to do is think about while I have to manage all 140 00:10:59,21 --> 00:11:04,14 of this. It's not as overwhelming as it sounds it's 141 00:11:04,18 --> 00:11:06,81 a little steps and so you know first finding 142 00:11:06,82 --> 00:11:10,56 a doctor that you feel comfortable with and that you know is knowledgeable in 143 00:11:10,57 --> 00:11:17,15 fibromyalgia and can guide you on you know treatments and therapies that you want 144 00:11:17,16 --> 00:11:22,55 to that you want to try everybody with fibromyalgia reacts differently to the. 145 00:11:22,61 --> 00:11:27,57 Treatments there are great medications or three that are now approved by the F.D.A. 146 00:11:27,57 --> 00:11:34,52 . There's also. Commonly people with fibromyalgia will take antidepressants that 147 00:11:34,53 --> 00:11:38,86 will help with sleep so people hear the word anti-depressant he said but I'm not 148 00:11:38,87 --> 00:11:44,10 depressed right and it's not for that it's for sleep there's also depressants can 149 00:11:44,11 --> 00:11:48,15 also help with pain and then there's other pain relieving medications that can be 150 00:11:48,16 --> 00:11:54,19 used. In addition to medications or so much more that you. That you need to 151 00:11:54,20 --> 00:12:00,03 incorporate into in terms of managing in terms of illness that's right. Your diet 152 00:12:00,22 --> 00:12:07,02 diet exercise is managing your sleep about ninety four percent of 153 00:12:07,03 --> 00:12:10,22 people with fibromyalgia have sleep disorders and it's kind of 154 00:12:10,23 --> 00:12:14,86 a chicken and egg situation where they don't know which one came first OK you as 155 00:12:14,87 --> 00:12:20,39 a patient It doesn't matter you just want to sleep you do you do so so there's 156 00:12:20,40 --> 00:12:26,27 medications that can help with that there's also simple more should I say easier 157 00:12:26,28 --> 00:12:29,27 things than possibly medication if you're someone who's 158 00:12:29,28 --> 00:12:34,15 a little shy of medication. Again it might be necessary for you to take 159 00:12:34,16 --> 00:12:38,58 a medication but sometimes there are sleep what we call Sleep hygiene techniques 160 00:12:38,59 --> 00:12:39,95 where you know are you sleeping in 161 00:12:39,96 --> 00:12:43,61 a dark room are you going to bed at the same time every night and waking up at the 162 00:12:43,62 --> 00:12:47,51 same time so that things you can control those are the things that you can control 163 00:12:48,16 --> 00:12:52,63 and in this strategy of basically there's there's five things to use 164 00:12:52,64 --> 00:12:58,03 a medication so we've kind of touched on diet exercise sleep and then stress 165 00:12:58,04 --> 00:13:03,15 management yes it's you have to be doing all five of those things in the the great 166 00:13:03,16 --> 00:13:07,49 thing is that when you find something in one of those areas often it affects the 167 00:13:07,50 --> 00:13:12,35 other areas so if you improve in one area another area might improve OK however you 168 00:13:12,36 --> 00:13:18,24 can not do one of those things and expect everything to get better as well. And so 169 00:13:18,25 --> 00:13:22,11 with like the stress management that something that another step that you can do 170 00:13:22,12 --> 00:13:26,12 often I. In your own but then that might be a great time to to bring in 171 00:13:26,13 --> 00:13:27,96 a psychologist or 172 00:13:28,28 --> 00:13:33,47 a counsellor who can you know maybe Guy you with if you are having depression or 173 00:13:33,48 --> 00:13:38,67 anxiety which just happen to people with fibromyalgia. It can be kind of 174 00:13:38,68 --> 00:13:43,45 a co-existing condition but it also could be when you're living with 175 00:13:43,46 --> 00:13:47,53 a chronic illness I don't feel bad that you might be depressed who wouldn't be 176 00:13:47,54 --> 00:13:52,43 depressed sister when everything about your life changes rather quickly too you 177 00:13:52,44 --> 00:13:58,70 know and speaking of those changes you were so young you were so active. That in 178 00:13:58,71 --> 00:14:04,10 your mind was taken away from you but you have regained that you were back to 179 00:14:04,11 --> 00:14:10,81 exercising tell us what you do. Well what got me literally walking again was 180 00:14:10,93 --> 00:14:16,93 water aerobics Wow and I loved it and I have to say if you haven't tried the pool 181 00:14:17,92 --> 00:14:21,86 you've got to find the right pool you know want to be cold because when cold in 182 00:14:21,87 --> 00:14:25,90 your tummy then your muscles hurt all over again right but if you find 183 00:14:26,37 --> 00:14:27,09 a pool that's 184 00:14:27,10 --> 00:14:32,03 a right temperature it's fantastic I mean there were times where when I was in the 185 00:14:32,04 --> 00:14:37,93 water I was pain free you know you just you felt so good so I highly recommend that 186 00:14:37,94 --> 00:14:39,53 one especially if you're having 187 00:14:39,54 --> 00:14:46,18 a difficult time moving the water is so soothing and takes stress off your body 188 00:14:46,80 --> 00:14:48,23 being in the water so it's 189 00:14:48,24 --> 00:14:53,34 a gentle or form of exercise but there are other gentle forms to try to use create 190 00:14:53,35 --> 00:15:00,24 There's some really mild yoga that's wonderful. There actually exercise videos that 191 00:15:00,25 --> 00:15:04,95 you can buy for fibromyalgia and you know if all of that if you're sitting at home 192 00:15:04,96 --> 00:15:09,52 and you're watching this and you can't move I have been there and like I said I 193 00:15:09,53 --> 00:15:10,70 know what it's like to walk 194 00:15:10,71 --> 00:15:14,56 a few steps and that's it you're done for the day that's all the exercise you can 195 00:15:14,57 --> 00:15:19,68 tolerate but the important thing is to talk to your doctor about you know what you 196 00:15:19,69 --> 00:15:25,88 can do with and maybe start slowly with just walk to your kitchen every day and 197 00:15:25,89 --> 00:15:29,39 gradually you'll be able to walk to the end of your driveway right as I knew you 198 00:15:29,40 --> 00:15:34,20 walked two doors down and you just keep going and then build on the six like you 199 00:15:34,38 --> 00:15:38,50 that's what I do why don't I could be on the move when I was doing the water 200 00:15:38,51 --> 00:15:41,50 aerobics that got me moving again so there's a lot of 201 00:15:41,78 --> 00:15:46,99 a lot of things that can be done I'm so happy for you with that. There's an 202 00:15:47,00 --> 00:15:52,64 interesting story that you shared with me and that like you to share it with with 203 00:15:52,65 --> 00:15:58,33 our viewers. When did fibromyalgia become 204 00:15:58,73 --> 00:16:04,86 fibromyalgia and tell us the story behind that OK I can't remember the year that 205 00:16:04,87 --> 00:16:09,27 the fibromyalgia term was first used before that it had other names like fibro 206 00:16:09,28 --> 00:16:14,44 situs but it goes all the way back to the Book of Job in the Bible researchers that 207 00:16:14,45 --> 00:16:19,20 I've seen at meetings can point out excerpts from the Book of Job worth he 208 00:16:19,25 --> 00:16:25,68 describes the pain in the fatigue in the feelings of five for my ALSA well so 209 00:16:26,12 --> 00:16:30,07 researchers believe that this illness has been around a long time it's been called 210 00:16:30,08 --> 00:16:36,38 a lot of different names so it's been you know progressing through the years even. 211 00:16:37,57 --> 00:16:43,56 Internet international fibromyalgia Awareness Day The reason May twelfth was picked 212 00:16:43,57 --> 00:16:49,60 for that day is that Florence Nightingale spur thing and the founding group that 213 00:16:49,61 --> 00:16:56,17 started the awareness day efforts realized in research that she had 214 00:16:56,18 --> 00:17:02,56 fibromyalgia like symptoms and probably chronic fatigue and so more than likely 215 00:17:02,57 --> 00:17:06,40 Well it wasn't diagnosed back and she did have fibromyalgia and maybe chronic 216 00:17:06,41 --> 00:17:10,99 fatigue syndrome so that's that's how the May twelfth date was selected for 217 00:17:11,00 --> 00:17:16,69 Awareness Day and. Starting two thousand and one our group wanted to you know 218 00:17:16,96 --> 00:17:20,84 recognize that they and celebrate that day in Michigan and so we've started an 219 00:17:20,85 --> 00:17:25,55 event held one every year since two thousand and one recognizing the day and 220 00:17:25,99 --> 00:17:29,92 raising awareness here in Michigan to help people understand what it is and 221 00:17:30,28 --> 00:17:32,91 hopefully if you have some of these symptoms and you're not getting 222 00:17:32,92 --> 00:17:37,72 a diagnosis you know maybe you can talk to your doctor and see if that's you know 223 00:17:37,73 --> 00:17:42,64 a possible symptom you might be having we don't want you to wait five years before 224 00:17:42,65 --> 00:17:42,96 you get 225 00:17:42,97 --> 00:17:48,26 a diagnosis in that time I know just from the work I've done over the fifteen years 226 00:17:48,26 --> 00:17:53,80 . So much changes in your life if you're not getting help and if nobody below. 227 00:17:53,83 --> 00:17:59,84 Leaves that you have an illness and so the quicker we can get you on the road to 228 00:17:59,85 --> 00:18:03,67 understanding what you have and knowing the treatments you know hopefully the 229 00:18:03,68 --> 00:18:10,23 better you'll feel and. The less disabled you make become from the illness. 230 00:18:11,29 --> 00:18:16,62 Well it looks like you're getting a lot of awareness you brought this today it's 231 00:18:16,63 --> 00:18:22,83 a resolution from the Senate Yes that's correct every year since two thousand and 232 00:18:22,87 --> 00:18:27,38 one we've reached out to our government here in Michigan and work with some really 233 00:18:27,39 --> 00:18:33,76 wonderful representatives in the house and senators in the Senate to have 234 00:18:33,77 --> 00:18:38,74 a resolution acknowledging May twelfth as Awareness Day here in Michigan so every 235 00:18:38,75 --> 00:18:43,76 year we go back to Leon saying and they've given us another proclamation and we've 236 00:18:43,77 --> 00:18:48,40 talked to the the new people that we haven't reached out to before than just you 237 00:18:48,41 --> 00:18:53,44 know continue our relationship with the better that we that we do know from before 238 00:18:53,44 --> 00:19:00,26 . Well very good which brings us to your conference so tell us when it is 239 00:19:00,60 --> 00:19:05,90 it's on Saturday May fifth at Saint John McComb Oakland hospital in Warren Michigan 240 00:19:06,34 --> 00:19:10,36 and that's from twelve thirty to four fifteen Dr Carol B. 241 00:19:10,37 --> 00:19:14,07 Else who is the founder of the Beales Institute in Lansing will be our speaker 242 00:19:14,50 --> 00:19:19,03 She's been researching fibromyalgia for over thirty five years and she's just 243 00:19:19,04 --> 00:19:26,04 a wealth of knowledge and very humorous too and then we also have Laura Russell 244 00:19:26,05 --> 00:19:30,31 who is from the wellness clinic and she will be talking about how to cope 245 00:19:30,32 --> 00:19:34,02 positively with fibromyalgia OK OK So it's 246 00:19:34,03 --> 00:19:38,75 a great event we encourage you to bring your family members and friends it really 247 00:19:38,76 --> 00:19:44,76 helps the whole family if you can come together and learn more about it we know 248 00:19:44,77 --> 00:19:50,88 that family members struggle too with the illness because it's so invisible so hard 249 00:19:50,89 --> 00:19:57,31 to understand you know one sec. You do you feel fine the next second you know you 250 00:19:57,32 --> 00:20:03,18 don't know for me that's one of the hardest challenges with fibromyalgia is you 251 00:20:03,19 --> 00:20:08,48 just never know you know how you're going to feel and some of that can be restored 252 00:20:08,52 --> 00:20:13,40 through things like journaling and different tracking things that you can do to 253 00:20:13,41 --> 00:20:18,21 start to realize what what flairs your condition what makes it worse so there are 254 00:20:18,22 --> 00:20:22,12 actually some things that you can do to kind of take control that so you don't feel 255 00:20:22,13 --> 00:20:26,86 so you know I don't know why this is happening you can you can learn some of that 256 00:20:27,64 --> 00:20:30,84 but I still struggle with that and I know that you know have I have two small 257 00:20:30,85 --> 00:20:37,69 children yes you do and they they understand what's going on with me pretty much 258 00:20:37,70 --> 00:20:41,11 you know I'm sure they don't you know fully understand it but you know both my 259 00:20:41,12 --> 00:20:45,42 children since the age of I don't know two or three could say the word fiber my. 260 00:20:47,65 --> 00:20:54,50 Kids are real smart. And you know they know that you know mommy has fiber in my 261 00:20:54,51 --> 00:21:00,78 Elza and some days you know my eye is very comforting for me sorry for ice packs at 262 00:21:00,79 --> 00:21:05,61 all put on and you know sometimes I just need to lay in bed and they can lay in the 263 00:21:05,62 --> 00:21:07,19 bed and you know watch the T.V. 264 00:21:07,20 --> 00:21:12,19 Show with me I try to work around you know what we can do but one coping skill that 265 00:21:12,20 --> 00:21:16,32 I found with them is you know some families will tell their children oh well next 266 00:21:16,33 --> 00:21:20,35 week we're going to go do this sector pretty I don't do that because if I'm not 267 00:21:20,36 --> 00:21:24,46 feeling well then you know that leads to restoration because they knew about 268 00:21:24,47 --> 00:21:26,87 something really fun and now we can't do it right which is 269 00:21:26,88 --> 00:21:30,97 a disappointment that's right and that was hard on me because you know when you 270 00:21:30,98 --> 00:21:34,81 don't feel good and now you're disappointing your child that makes you feel worse 271 00:21:34,85 --> 00:21:39,62 and that's very key because you're you're letting us know that you have to know how 272 00:21:39,63 --> 00:21:46,39 to communicate. Effectively when you are dealing with in illness so that you 273 00:21:46,40 --> 00:21:51,54 don't create more stressful situations in terms of disappointing the children and 274 00:21:51,55 --> 00:21:57,99 you have two beautiful little boys tell us their names Cooper is eight and is six 275 00:21:58,03 --> 00:22:02,18 OK Well tell us how they help you out. Always putting 276 00:22:02,19 --> 00:22:05,72 a smile on my face you know it's you know if you are having 277 00:22:05,73 --> 00:22:08,60 a bad day you know watching them brings 278 00:22:08,61 --> 00:22:14,19 a smile to my face and thinks you know takes my mind off of it but I know I must be 279 00:22:14,20 --> 00:22:18,36 doing something OK because you know they think they're playing pharmacy and 280 00:22:18,37 --> 00:22:20,03 conference call I'm involved in 281 00:22:20,04 --> 00:22:23,93 a lot of conference calls with my work here and when I'm also the vice president 282 00:22:23,94 --> 00:22:27,53 for the National Fibromyalgia and Chronic Pain Association so they're used to 283 00:22:27,54 --> 00:22:32,06 seeing me on the phone and talking to people so I think they're adjusting just fine 284 00:22:32,10 --> 00:22:38,47 to one mom with chronic illness Well we really do appreciate you coming in and just 285 00:22:39,02 --> 00:22:43,89 talking about your upcoming conference and event and just giving more awareness to 286 00:22:44,09 --> 00:22:50,59 fibro my Al just so we really appreciate you thank you. Thank you so much for that 287 00:22:50,85 --> 00:22:54,19 well that's going to do it for us here at reaching out thanks for watching.